Re: Duration of Antibiotics

January 17, 2006

HELLO HEATHER, YOUR PHARMACIST UNFORTUNATELY IS CORRECT UNLESS YOU HAVE ONLY

HAD lYME DISEASE FOR A RELATIVELY SHORT TIME. THE BACTERIA IS ABLE TO LIE

DORMANT IN THE CELL MEMBRANE AND NOTHING IS ABLE TO REACH IT AT THAT STAGE.

IF YOU HAVE WHAT IS CALLED CHRONIC LYME DISEASE YOU ARE GOING TO HAVE TO

LEARN HOW TO LIVE WITH IT. I BECAME INFECTED IN 1994, BUT WENT UNDIAGNOSED

UNTIL 9/01. I HAVE LEARNED A GOOD DEAL ABOUT THE DISEASE SINCE January 2002.

I

BELIEVE MY BEST BEGINNING EDUCATION WAS FINDING THIS LYME AID NETWORK.

I STARTED USING A RIFE MACHINE IN EARLY 2002 AFTER FIRST UNDERGOING IV

ROCEPHIN TREATMENT FOR 28 DAYS. MY KNOW NOTHING INFECTIOUS DOCTORS TOLD ME I

WAS

CURED, BUT I HAD A HOME CARE NURSE THAT CAME TO MY HOUSE WHILE I WAS ON THE

IV TREATMENT TO CHANGE MY PICC LINE BANDAGE AND TAKE A BLOOD SAMPLE. SHE TOLD

ME SHE WAS ON IV FOR 11 MONTHS AND I SUBSEQUENTLY LEARNED THAT VARIOUS

PEOPLE HAVE BEEN ON THE IV TREATMENT FOR VARIOUS LENGTHS OF TIME WITH NO CURE.

I AM A STRONG BELIEVER IN ALTERNATIVE MEDICINE FOR TREATING LYME DISEASE.

FROM MY OWN PERSPECTIVE A PERSON WITH CHRONIC LYME MUST CONTINUOUSLY TRY TO

REDUCE THE LYME BACTERIA LOAD IN THE BODY AND BY DOING THIS ONE CAN LEAD A

FAIRLY NORMAL LIFE.

WHATEVER YOU DO PLEASE SEE A llmd AS A REGULAR DOCTOR HAS NO KNOWLEDGE ABOUT

LYME AND IS PRETTY CLOSE TO BEING USELESS IF NOT DANGEROUS.

I COULD GO ON AND ON BUT I DON'T BELIEVE IT WOULD BE MUCH HELP FOR YOU

UNLESS YOU HAVE A COMPLETE OPEN MIND WHICH IS USUALLY NOT THE CASE FOR A NEW

BEGINNER WITH CHRONIC LYME DISEASE. IT IS A VERY SCARY THING AND YOU PROBABLY

THINK YOU CAN ONLY TRUST YOUR DOCTOR? I CAN UNDERSTAND THIS THINKING, BUT MY

ADVICE TO YOU IS KEEP SEARCHING FOR THE MOST KNOWLEDGEABLE PERSON WHO KNOWS HOW

TO TREAT LYME DISEASE. IT MAY NOT BE YOUR FIRST LLMD, IN FACT IT MIGHT NOT

EVEN BE A DOCTOR!

VERY BEST OF LUCK!

SIDNEY

January 17, 2006

,

It's my understanding that Lyme treatment is " open ended " . Which

translates to they will continue the treatement until all of your

tests are 100% negative and you are 100% cured of your symptoms. I

believe a standard practice of LLMD's is to continue to treat Lyme

for up to 2 months after all tests and symptoms are negative just to

be sure all of the Lyme is killed and can't make a come back.

The way I understand the issue of never being cured is that yes the

Lyme may be dormant in our systems for the rest of our lives but

that doesn't mean that we aren't cured. My definition of being

cured is that I'm feeling close to 100% how I felt before being

infected with Lyme (allowing for normal aging regression). I have

heard many " experts " say that it is possible for the dormant Lyme to

be come active under extremely stressfull conditions. For example

after a car accident. That is only a possibility, it's not

definite. It's like anything else with this disease no one knows

for sure. So it's like worrying about getting hit by a bus

tomorrow. It could happen but we should live our lives to the

fullest and enjoy feeling well again. Be deligent and keep informed

on the progress of the cure for Lyme but then go live life and enjoy!

My mother-in-law had Lyme over 10 years ago. Last year she was hit

by a car while walking to Church (the irony was that the lady that

hit her was going to the same Mass). She has since recovered from a

broken neck (had to wear a hallow and a neck brace for more then 6

months), bruised ribs, knee and leg injuries, large facial gash and

many other issues related to the accident. On my recommendatin she

went to my LLMD to get checked for Lyme just in case it would

reactivate after her very serious trama, her tests all came back

negative and she was cleared. My LLMD is convinced that the Lyme

never returned.

That's just one case. The answer is nobody really knows for sure.

So while it may be possible for Lyme to reactivate in a person it

doesn't happen to everyone.

We should all be aware of this possibility and know to check for

Lyme if you ever exerience a very stressfull event in the future.

This is good news, because we know to look for it we will be able to

quickly identify it, get treated and recover quickly. Knowing about

it actually is good news.

Concentrate on getting well and then enjoy your health!

Be well,

>

> Hey all-

>

> What is the average duration of taking antis? I am seeing a Lyme

dr.

> but he did say I should know in a month or two how I feel. He did

> not say how long I would take them but I don't think it will be

for

> years.

>

> My last appt. with my neurologist today and he said I should also

> know by two months time if the antis work. He was very open to the

> idea of trying tx for Lyme. I am also going to a hematologist to

see

> why I have low ferritin and getting b12 shots all to help with the

> pain and fatigue.

>

> I can't talk to anyone. I told my pharmacist I feel better and he

> said-I hate to say this, but there is no cure for Lyme. I asked

him

> why and he said it lies dormant and then comes out when your

immune

> system is down. He is a great man and means well. He knows how

sick

> I have been.

>

> Keep the faith.

>

January 18, 2006

How long you stay on abx depends on how well you're doing. My first

course was doxy for 6 months. Since then, I've never been on any one

abx for more than 3 or 4 months at a time. Recently, I've started to

take even shorter courses of a month or two.

Your pharmacist is half right. There are people who do recover from

chronic Lyme -- that part he got wrong. The part he got right is

that the spirochetes do hide from the immune system.

Based on my own experience, I believe that the 'chetes figure out

how to hide out when I'm on any one abx for longer than a couple of

months. When I change abx, I Herx and start all over again.

I'm hoping that by switching abx every few months I'll eventually

get rid of the last of the bugs, but I'm not counting on it. I've

been on abx since 2003. I have no idea when I was infected.

Jessie

>

> Hey all-

>

> What is the average duration of taking antis? I am seeing a Lyme

dr.

> but he did say I should know in a month or two how I feel. He did

> not say how long I would take them but I don't think it will be

for

> years.

>

> My last appt. with my neurologist today and he said I should also

> know by two months time if the antis work. He was very open to the

> idea of trying tx for Lyme. I am also going to a hematologist to

see

> why I have low ferritin and getting b12 shots all to help with the

> pain and fatigue.

>

> I can't talk to anyone. I told my pharmacist I feel better and he

> said-I hate to say this, but there is no cure for Lyme. I asked

him

> why and he said it lies dormant and then comes out when your

immune

> system is down. He is a great man and means well. He knows how

sick

> I have been.

>

> Keep the faith.

>

January 18, 2006

,

If you have low ferritin and Lyme that is a good indicator you may have

Babesia and/or Rocky Mtn Spotted Fever. RMSF wrecks havoc on the blood

cells and can cause all sorts of hematologial problems. Babs steals

iron from the body and binds it in a way that the body cannot utilize.

So you might think about some coinfection testing if you haven't

already.

Be careful on the B12 shots not to get the standard cynanocobalamine

which is the form of B12 most drs have on hand. It is also the

cheapest, but contains cyanide which if taken often is determental to

people with CNS problems which most Lymies have. I take a form of B12

hydroxycobalamine shots which have to be compounded from a pharmacy in

Alabama. The hydroxy B12 is also used to in the CFS protocal. It will

also chelate cyanide out of the system of smokers and those that have

lived around heavily industrialized areas that inhale cynanide

unknowingly. I call it my happy shot because the next couple days after

my shot I always get a boost of energy. I inject before bed time

because it has a tendency to cause drowsiness for some reason.

Methylcobalamine shots are another form which are a little more readily

available and probably a little cheaper. I don't know if those work as

well though. If you can talk your dr into ordering the B12 shots from a

compounding pharmacy for you and have the dr bill you then insurance

will often cover it. Cigna covered 60% of the cost and my dr just gave

me the syringes, needles & even guaze and alcohol swabs. She charged me

a office visit to have her nurse teach me how to do the injections

myself. Ended up half her office now takes hydroxycobalamine after I

showed her some research on it and she ordered it for me.

--- I am also going to a hematologist to

> see

> > why I have low ferritin and getting b12 shots all to help with the

> > pain and fatigue.

> >

>

January 18, 2006

Thanks for the info. I am getting regular b12 shots. I will ask my

pscy. about this. He is very knowledgeable about wholistic meds to

see what he thinks. He even listed a whole slew of alternative txs

for Lyme so I can be his go between to get the Lyme drs. opinion. He

is a big information seeker.

My family dr. will not order from a compounding pharmacy bc she is

not a wholistic dr. and does not believe in this.

In , " wtptoo " <wtptoo@y...> wrote:

>

> ,

>

> If you have low ferritin and Lyme that is a good indicator you may

have

> Babesia and/or Rocky Mtn Spotted Fever. RMSF wrecks havoc on the

blood

> cells and can cause all sorts of hematologial problems. Babs steals

> iron from the body and binds it in a way that the body cannot

utilize.

> So you might think about some coinfection testing if you haven't

> already.

>

> Be careful on the B12 shots not to get the standard

cynanocobalamine

> which is the form of B12 most drs have on hand. It is also the

> cheapest, but contains cyanide which if taken often is determental

to

> people with CNS problems which most Lymies have. I take a form of

B12

> hydroxycobalamine shots which have to be compounded from a pharmacy

in

> Alabama. The hydroxy B12 is also used to in the CFS protocal. It

will

> also chelate cyanide out of the system of smokers and those that

have

> lived around heavily industrialized areas that inhale cynanide

> unknowingly. I call it my happy shot because the next couple days

after

> my shot I always get a boost of energy. I inject before bed time

> because it has a tendency to cause drowsiness for some reason.

>

> Methylcobalamine shots are another form which are a little more

readily

> available and probably a little cheaper. I don't know if those work

as

> well though. If you can talk your dr into ordering the B12 shots

from a

> compounding pharmacy for you and have the dr bill you then

insurance

> will often cover it. Cigna covered 60% of the cost and my dr just

gave

> me the syringes, needles & even guaze and alcohol swabs. She

charged me

> a office visit to have her nurse teach me how to do the injections

> myself. Ended up half her office now takes hydroxycobalamine after

I

> showed her some research on it and she ordered it for me.

>

> --- I am also going to a hematologist to

> > see

> > > why I have low ferritin and getting b12 shots all to help with

the

> > > pain and fatigue.

> > >

> >

>

January 18, 2006

ummmm. thanks. Very interesting. If the lyme always hides and can

never be Killed so to speak, it does not make sense for me to take

antibiotics for the rest of my life. Too much damage to the body.

I can see taking them long enough to kill the bacteria but if it

takes a lifetime or until your death, I don't understand that one. At

that point, it seems that pain meds, physical therapy, and other

therapies may be the main stay. If you can't get rid of it, that just

makes sense.

I will have to ask my Lyme dr. I know he did not seem that I would be

on them for years. A long time yes, but he said it will work or not.

We will start killing the bacteria and check in at 4 weeks. We did

not discuss all of the logistics yet.

In , " Jessie MacMillan "

<jessiemacmillan@y...> wrote:

>

> How long you stay on abx depends on how well you're doing. My first

> course was doxy for 6 months. Since then, I've never been on any

one

> abx for more than 3 or 4 months at a time. Recently, I've started

to

> take even shorter courses of a month or two.

>

> Your pharmacist is half right. There are people who do recover from

> chronic Lyme -- that part he got wrong. The part he got right is

> that the spirochetes do hide from the immune system.

>

> Based on my own experience, I believe that the 'chetes figure out

> how to hide out when I'm on any one abx for longer than a couple of

> months. When I change abx, I Herx and start all over again.

>

> I'm hoping that by switching abx every few months I'll eventually

> get rid of the last of the bugs, but I'm not counting on it. I've

> been on abx since 2003. I have no idea when I was infected.

>

> Jessie

>

> >

> > Hey all-

> >

> > What is the average duration of taking antis? I am seeing a Lyme

> dr.

> > but he did say I should know in a month or two how I feel. He did

> > not say how long I would take them but I don't think it will be

> for

> > years.

> >

> > My last appt. with my neurologist today and he said I should also

> > know by two months time if the antis work. He was very open to

the

> > idea of trying tx for Lyme. I am also going to a hematologist to

> see

> > why I have low ferritin and getting b12 shots all to help with

the

> > pain and fatigue.

> >

> > I can't talk to anyone. I told my pharmacist I feel better and he

> > said-I hate to say this, but there is no cure for Lyme. I asked

> him

> > why and he said it lies dormant and then comes out when your

> immune

> > system is down. He is a great man and means well. He knows how

> sick

> > I have been.

> >

> > Keep the faith.

> >

>

January 18, 2006

,

Have you asked her about this or just assuming she won't order? The dr

that orders B12 for me is actually an ob/gyn not holistic. She also has

at times ordered natural hormones that have to be compounded for me

because I refuse to take the synthetic ones.

>

> My family dr. will not order from a compounding pharmacy bc she is

> not a wholistic dr. and does not believe in this.

>

January 18, 2006

The antibiotics are not life long. Sometimes for a few years then

once the symptoms subside for 2-6 months depending on your dr's

opinion then you stop. People only start taking them again if

symptoms start flaring that make them suspect it is the Lyme again.

The spirochetes can go dormant and the body can also learn how to

create antibodies against them. The alternative to not treating Lyme

is to go deaf, blind, crippled and have kidney and heart failure.

Antibiotics do not have to damage the body. You have to learn how to

guard against that. You really have to take charge of your health

and learn to do your own research. Not just by reading boards, but

dig up your own research if you want to survive Lyme and survive the

treatments. Alot of people just don't want to do that though. You

have to be a fighter and it seems like you are very intelligent and

assertive in your health care. You just really have to be like that.

I know someone who was cured 15 yrs ago and has had to get back on

abx a few times since then, but not for long. She may have been re-

infected though which may also be the problem of so many others if

they continue to live in high risk areas.

>

> ummmm. thanks. Very interesting. If the lyme always hides and can

> never be Killed so to speak, it does not make sense for me to take

> antibiotics for the rest of my life. Too much damage to the body.

> I can see taking them long enough to kill the bacteria but if it

> takes a lifetime or until your death, I don't understand that one.

At

> that point, it seems that pain meds, physical therapy, and other

> therapies may be the main stay. If you can't get rid of it, that

just

> makes sense.

> I will have to ask my Lyme dr. I know he did not seem that I would

be

> on them for years. A long time yes, but he said it will work or

not.

> We will start killing the bacteria and check in at 4 weeks. We did

> not discuss all of the logistics yet.

>

January 18, 2006

I will have to check it out. Thanks. I did have testoterone cream

compounded.

In , " wtptoo " <wtptoo@y...> wrote:

>

> ,

>

> Have you asked her about this or just assuming she won't order? The

dr

> that orders B12 for me is actually an ob/gyn not holistic. She also

has

> at times ordered natural hormones that have to be compounded for me

> because I refuse to take the synthetic ones.

>

> >

> > My family dr. will not order from a compounding pharmacy bc she

is

> > not a wholistic dr. and does not believe in this.

> >

>

January 18, 2006

that is good information. I keep re-reading Dr. B's guidelines and did

searches and read more about herxing. It just helps validate why I am

trying this treatment.

January 18, 2006

,

The antibiotics will kill the Lyme in your blood and hopefully your

brain and spinal fluid. That is the goal of the antibiotics, to

kill the Lyme and/or co-infections everywhere that it can. The Lyme

can burrow deep into muscles or tendons and go dormant in an effort

to evade the antibiotics and your body's natural immune system.

As long as the antibiotics are killing the Lyme every where that it

can and you are getting better then it makes sense to continue

taking them till the completeion of your LLMD's treatment plan.

It would be best to discuss this in detail with your LLMD.

Be well,

> > >

> > > Hey all-

> > >

> > > What is the average duration of taking antis? I am seeing a

Lyme

> > dr.

> > > but he did say I should know in a month or two how I feel. He

did

> > > not say how long I would take them but I don't think it will

be

> > for

> > > years.

> > >

> > > My last appt. with my neurologist today and he said I should

also

> > > know by two months time if the antis work. He was very open to

> the

> > > idea of trying tx for Lyme. I am also going to a hematologist

to

> > see

> > > why I have low ferritin and getting b12 shots all to help with

> the

> > > pain and fatigue.

> > >

> > > I can't talk to anyone. I told my pharmacist I feel better and

he

> > > said-I hate to say this, but there is no cure for Lyme. I

asked

> > him

> > > why and he said it lies dormant and then comes out when your

> > immune

> > > system is down. He is a great man and means well. He knows how

> > sick

> > > I have been.

> > >

> > > Keep the faith.

> > >

> >

>

January 18, 2006

Great points. My LLMD contains that most relapses occur for the two

reasons that you mention; first that treatment of chronic patients

are stopped too early and not all of the Lyme is killed. Then it

slowly starts to multiply every month and can take years to rear

it's ugly head again. All because there was a small amount left

that should have been killed by taking antibiotics for 2 - 3 months

after all tests are negative and all symptoms are negative. The

second reason is that people are actually re-infected many years

after the initial infection. She reasons that people continue to

hike on the same trails and camp out in the same grounds where they

got the original infections. If you look at your habits over the

past 15 years it seems to make sense since we seem to inhabit mostly

the same places. If you have tics in or near your home re-infection

would occur often.

Be well,

> >

> > ummmm. thanks. Very interesting. If the lyme always hides and

can

> > never be Killed so to speak, it does not make sense for me to

take

> > antibiotics for the rest of my life. Too much damage to the body.

> > I can see taking them long enough to kill the bacteria but if it

> > takes a lifetime or until your death, I don't understand that

one.

> At

> > that point, it seems that pain meds, physical therapy, and other

> > therapies may be the main stay. If you can't get rid of it, that

> just

> > makes sense.

> > I will have to ask my Lyme dr. I know he did not seem that I

would

> be

> > on them for years. A long time yes, but he said it will work or

> not.

> > We will start killing the bacteria and check in at 4 weeks. We

did

> > not discuss all of the logistics yet.

> >

>

January 19, 2006

Well said, . I certainly didn't mean to leave the impression

that one has to take antibiotics for the rest of one's life. But it

can be a long process. After the first 6 months of abx, I felt great

and ready to take on the world again; within 3 months I was back to

feeling lousy and another positive test confirmed why. There is no

one protocol that is guaranteed to work for everyone, which is why

it's worthwhile to do our own research and reading.

Jessie

> >

> > ummmm. thanks. Very interesting. If the lyme always hides and

can

> > never be Killed so to speak, it does not make sense for me to

take

> > antibiotics for the rest of my life. Too much damage to the body.

> > I can see taking them long enough to kill the bacteria but if it

> > takes a lifetime or until your death, I don't understand that

one.

> At

> > that point, it seems that pain meds, physical therapy, and other

> > therapies may be the main stay. If you can't get rid of it, that

> just

> > makes sense.

> > I will have to ask my Lyme dr. I know he did not seem that I

would

> be

> > on them for years. A long time yes, but he said it will work or

> not.

> > We will start killing the bacteria and check in at 4 weeks. We

did

> > not discuss all of the logistics yet.

> >

>

January 19, 2006

Jessie,

Yep the LLMD said originally it was thought 2 months past feeling good

was when to stop abx. But then he started having patients come back or

getting other dr's patients coming in with symptoms returning. So now

he says 4 months minimum, but thinks 6 months is better.

>

> Well said, . I certainly didn't mean to leave the impression

> that one has to take antibiotics for the rest of one's life. But it

> can be a long process. After the first 6 months of abx, I felt great

> and ready to take on the world again; within 3 months I was back to

> feeling lousy and another positive test confirmed why. There is no

> one protocol that is guaranteed to work for everyone, which is why

> it's worthwhile to do our own research and reading.

>

> Jessie

>

January 19, 2006

Yup, everyone of us is different. 2 - 3 months past all test coming

back negative and 2 - 3 months past no symptoms. Then My LLMD has

you come back 8 weeks later for further blood tests and to be sure

that no symptoms have returned. Stay on top of it.

Be well,

> >

> > Well said, . I certainly didn't mean to leave the

impression

> > that one has to take antibiotics for the rest of one's life. But

it

> > can be a long process. After the first 6 months of abx, I felt

great

> > and ready to take on the world again; within 3 months I was back

to

> > feeling lousy and another positive test confirmed why. There is

no

> > one protocol that is guaranteed to work for everyone, which is

why

> > it's worthwhile to do our own research and reading.

> >

> > Jessie

> >

>

January 20, 2006

I saw my LLMD yesterday. I was told that my pathologically abnormally

big tonsils will need to come out if they don't shrink with the abx

treatment. Additionally she wants me to have one of the swollen

lymphnodes excised and send in for PRC DNA test. She is of the

opinion that both harbour the Lyme bacteria and it would take MUCH

LONGER TREATMENT with abx to get me well. It seems to me so radical I

don't think I want to go throough with it. I posted this on Jan 18

but have had no response from anyone. Thank you for any thoughts.

-- Lida

> > >

> > > Well said, . I certainly didn't mean to leave the

> impression

> > > that one has to take antibiotics for the rest of one's life.

But

> it

> > > can be a long process. After the first 6 months of abx, I felt

> great

> > > and ready to take on the world again; within 3 months I was

back

> to

> > > feeling lousy and another positive test confirmed why. There is

> no

> > > one protocol that is guaranteed to work for everyone, which is

> why

> > > it's worthwhile to do our own research and reading.

> > >

> > > Jessie

> > >

> >

>

January 20, 2006

It is hard for us to give you the advice because we are not doctors but it does

make sense...I would try asking your llmd to converse with dr b to see the best

treatment for you and give you peace of mind...two are better then one...

eric

Lida <lidunkap@...> wrote: